Tuesday, 1 January 2013

52 things: 1. E-petition to the UK government

Ok.  Start the year as you mean to go on…..if you don’t like something, do something to try to change it. 
I don’t like the fact that in this country, we have no coherent strategy for autism research. 
I don’t like the fact that the ‘gold standard’ for research is the randomised controlled trial (RCT) - the RCT as ‘gold standard’ for autism interventions is based on a narrow definition of evidence based practice that ultimately dissuades parents from considering practices that do not yet have research support or have promising preliminary research support, even when risks are minimal and experience supports the effectiveness of such practices.  Read more about the constraints and implications of a narrow definition of evidence based practice in autism research from Barry Prizant, here.
I don’t like the fact that government organisations and (more frustratingly) big autism charities in the UK will not endorse an intervention until it has the seal of approval of an RCT. 
I don’t like the fact that it is taking years and years to get an RCT of Relationship Development Intervention funded because (in a nutshell) of the politics of the research world.
So, I have decided that I will do 52 things this year to try to raise awareness of the potential of RDI.  I’ll write here on my blog about what I’m doing and if anyone wants to join me in doing 52 things……you are most welcome.
This week’s action is to set up an e-petition calling for the UK’s Department of Health to fund an RCT of RDI.  Here is the link to the petition. 
100,000 signatures on this petition from UK residents will trigger a debate on the issue in the House of Commons.  Please don’t sign if you don’t have a UK address.  If you do – please share this petition as widely as possible with others who are resident in the UK who you think will support it.
Even if RDI isn’t your intervention of choice, I would still urge you to consider signing….we have to start somewhere in raising interventions up the autism research agenda.
Below is the supporting evidence (referred to in the petition) showing why an RCT of RDI should be supported.  Happy New Year everyone.
Relationship Development Intervention (RDI): why support funding for an RCT?
This paper aims to provide evidence that RDI is a cost effective treatment for autism, which delivers lifelong benefits to children and families.
A different perspective on autism
Over the past 20 years, research from the fields of autism, the brain, the developing mind, and child development has been converging to highlight that the sophisticated competencies we take for granted as adults - such as group collaboration, flexible problem-solving, meaningful reflection, future planning and preparation - originate in the first years of life.  These competencies are exactly the ones that are most impaired in autism.
Studies have shown that children’s primary difficulty is in the human propensity to identify with the mental states (and especially feelings) of other people.  This limitation in engaging with other persons is a motivational as well as cognitive disability.  It has profound implications for the children’s abilities to develop context-sensitive language, to think flexibly and creatively, and to participate in social and cultural life.
Many families of children with autism report that their difficulty understanding and relating to their child is one of the most frustrating and distressing aspects of autism.
In many (perhaps not all) cases of autism, the limitation in identifying with others is marked, but not absolute.  Critically, there is reason to believe that appropriately focussed intervention which fosters affected individuals’ capacity and motivation to engage with people promotes the development of new intellectual as well as social capacities.
The limited nature of current treatments for autism

There is widespread concern about the increasingly high prevalence rates of autism in the population.  A 2002 estimate was that approximately one out of every 100 children fulfils criteria for autism spectrum disorder (Charman, 2002).  A more recent study puts prevalence at 1 in 88 children.
A study from May 2011, which uses a total population sample, puts the prevalence of autism at an alarming 1 in 38 children.
Yet despite a rapidly growing demand for the treatment and management of this lifespan condition, resources are scant.  Of even greater concern, current approaches that seek to improve the condition are often limited in nature. 
Very few are informed by a sophisticated view of the developmental psychopathology of autism, and even fewer have a clear focus upon fostering affected individuals’ capacity and motivation for interpersonal engagement.
An overview of RDI
Relationship Development Intervention (RDI) is based upon research in developmental psychology and the developmental psychopathology of autism spectrum disorders.
The specific focus of RDI is to create a ‘guided participation’ relationship with caregivers, through which children develop competence in handling gradually more complex environments.
The programme involves supporting families and caregivers/school staff in their roles as participant guides, creating daily opportunities for adaptive and thoughtful responding in the face of novel and increasingly unpredictable settings and unexpected change.
The aim is for individuals on the autism spectrum to learn not only to tolerate, but also to enjoy changes and transitions.
The RDI Program focuses on developing:
- An appropriate mix of verbal and non-verbal communication, abilities to engage with others, and declarative, self-regulatory and self-narrative language
 - Episodic memory, in part with a view to building motivation
- Continually more complex cycles of regulation, challenge and new regulation
 - Reciprocal, genuinely fulfilling relationships
- Pleasure in living in dynamic environments where change is enriching
- Relationship Development Intervention involves rigorous and extensive training procedures and monitoring of competence, ensuring quality of care as well as programme adherence.
RDI is implemented through intensive parent/caregiver education, customised and balanced planning, modelling and role-playing, involving parents/caregivers in a support network, regular videotape review of caregiver-child performance, and parent/caregiver training and consultation.
Evidence of efficacy
There are four sources of evidence that together provide grounds for believing that RDI is effective in ameliorating autism-specific behaviour, especially in relation to the children’s limitations in social engagement and flexibility in thinking and action:
1. Peer reviewed published research
a)  Gutstein, Burgess, & Montfort (2007) report on the 3-year follow-up of 16 children who met 'gold standard' criteria (ADOS/ADIR) for autism, Asperger’s syndrome or autism spectrum disorder prior to treatment with RDI.   Marked clinical improvements after RDI were reported; for example, whereas prior to treatment 10 had ADOS scores corresponding with the diagnosis of autism, none did so at follow-up, at which point five were classified as ‘autism spectrum’ and five as ‘non-autism’. There were especially marked improvements in the children’s capacity to share experiences with others.  Semi-structured interviews with parents revealed that the children’s flexibility had significantly improved. Moreover, there had been positive changes in the children’s educational placements.  In this study there was not a treatment-as-usual control group (a previous pilot study had included such a control group who did not show the gains of the RDI-treated group). Having said this, the magnitude and breadth of this response to RDI renders it very unlikely that the effects were non-specific. 
b)  Aldred et al (2010) report a randomised controlled trial of an intervention for autism that has close affinity with RDI in its attempt to foster developmentally effective parental input through a focus upon the children’s social deficits. The aim was ‘to educate parents and train them in adapted communication tailored to their child’s individual competencies’. 
Whilst there was no improvement in adaptive behaviour, the children who received the intervention outperformed the control group in the areas of parent/child interaction, vocabulary and social measures.
Like RDI, this treatment approach provided specialized structured interventions that scaffold social interaction.  The uniqueness of RDI lies in its sharper focus on links between social relatedness and the capacity to engage in flexible thinking and coping through the guided-participation relationship.
2.  The principles underpinning RDI have been extensively researched
RDI is founded upon developmental principles that have been subject to systematic research.  For example:
- Tronick et al (1998) identified that it is the dyadic regulatory process between parent and child that creates emotional states
 - Vygotsky identified that all child development takes place initially in a dyad and is later internalised
- Trevarthen (2001) showed the importance of inter-subjective communication (being able to hold onto your perspective and compare it with what you think is the other person’s perspective) in child development

 - Hobson (2002) shows that interpersonal engagement is crucial to the development of the human mind
Researchers such as Jerome Bruner, Barbara Rogoff, Alan Fogel and Alan Sroufe have showed how the neural foundations for flexible thinking are typically constructed through thousands of special types of experiences that take place between children and their parents in the early years.
The early years parent-child relationship is the ‘cradle of thought’.  In children with autism, their autism gets in the way of their ability to participate in this special relationship.  Their development veers off on a different trajectory that ultimately results in rigid thinking, withdrawal from uncertainty and change and problems with social communication and social understanding.

RDI seeks to recapitulate this special early years relationship – to make the ‘cradle of thought’ accessible to the child once again.

RDI  focuses on aspects of autism that are pivotal for the development and maintenance of almost all the distressing features of the syndrome, and in particular, the children’s limited interpersonal engagement with other people and their accompanying propensity to becoming ‘stuck’ in particular, one-track modes of thinking.
The focus of RDI is what happens between the affected child and his or her caregivers, with special attention to emotional contact and behavioural regulation.  Thus RDI studies how a given child with autism has difficulties in engaging with another person emotionally; then it provides coaching for the carer to foster the child’s potential for such engagement, reducing the likelihood that moments of engagement (which are often fleeting) are lost.  Perhaps most important, RDI allows the child to enjoy and build upon the engagement that is achieved.  Such interpersonal engagement is hugely important not only for the child’s wellbeing and the parent’s ability to relate sensitively, but also for improving the child’s self-regulation, communication, and more flexible and appropriate thinking.
The intervention is concerned with fostering parenting, rather than attempting to modify children’s functioning over a protracted series of brief sessions.  It is widely accepted that when appropriately designed, parent interventions have special promise for fostering development among children with autism.
Current published research that demonstrates this includes:
 - Gulsrud et al (2010), which used a randomised controlled design to demonstrate that taking part in a joint attention intervention improved the ability of children with autism to regulate difficult emotions
- Solomon et al (2008), which demonstrated the effectiveness of a parent/child interaction therapy in producing an increase in shared positive emotion
 - Aldred et al (2010), a randomised controlled trial that showed improvements in parent/child interaction, vocabulary and social measures.
- Beurkens et al (2012), showing that severity of autism is related to impairment in child-caregiver interpersonal relatedness and that interventions that focus on improving social engagement hold considerable promise.
3. Clinical experience
In the UK, Dr Jessica Hobson, Senior Research Fellow at the Institute of Child Health, London, has very extensive clinical and research experience with children and adolescents with autism, and also clinical experience in reviewing the effects of RDI over extended periods of time.  Dr Hobson has been impressed not only by the rationale and implementation of RDI, but also by the step-by-step advances in social engagement and flexible thinking that RDI has fostered in children and adolescents with autism whom she has studied. Such personal clinical experience carries some weight, insofar as it accords with other evidence.
4. Consistent anecdotal evidence from families of significant changes in their children. 
Here are some examples:
Emma from Tonbridge (2009)
One of the biggest things I like about RDI is that it seems so logical to revisit the developmental stages of typically developing children and to try to help our autistic children to put these in place in the correct developmental order.
We have noticed big changes in flexibility and resilience when things do not go exactly to plan. We have noticed much more language - both requests and commenting - so he is now motivated to communicate with us for communications sake and not just for his needs - lots of people have noticed this
Lucinda Muschialli from East Sussex (2009)
Since Leo has started the RDI program a year ago we have seen a huge improvement in socialisation, communication and awareness. He is much more willing to communicate with us now and if he is enjoying something he will take us by the hand to show us, genuine experience-sharing communication.
RDI has helped the whole family to connect with Leo. Where beforehand he would often be found doing his own thing or 'in his own world', now it is much easier to draw him out and include him in our games and activities. We give him roles to do in the house now, so he can help me cook, clean and put things away and these give great opportunities for communication, especially developing non-verbal communication like referencing, gestures and facial expression. Leo really enjoys these and it gives him a great sense of pride when he does it well. Leo has developed so much since starting the RDI programme and he is more able to cope with the world due to what we have learnt together through RDI.
Anonymous (2009)
It is a revelation to see that our child could actually help change the wheel when we had a puncture, stay on task and 'with us' for long enough to help hang out washing, pick apples as a 'guided partner', help with sorting out cupboards and things at home. There is less resistance to doing undesired activities. We have seen an increase in language, being in synch with us and others, more amenable to ideas, greater flexibility, more give and take, less on a fixed agenda.
I think RDI is demanding and hard work and parents have to be aware of this but I think the key advantages it has over other methods are:
Its structured approach- tracing the relationship and communication skills and patterns through which typical children learn.
Its basis of flexible thinking as opposed to instructional type learning, focusing more on your child learning from you as a guide and being in synch with you.
Its focus on learning how to cope in a dynamic, ever-changing environment- these are key skills anyone needs to cope with in our rapidly-changing world, whether they be constrained by a disability or not.
Paul Trotman (2009)
Many people from teachers to relatives have noticed how much more independent he is.  He is a proper thinker now.  He no longer just does what we ask him to do, he thinks about better ways to do it, or short cuts, or alternatives. RDI really appealed to us because it seemed to focus on the ability to socialise and develop thinking skills.  He is trusting his own thought processes instead of relying on instruction from others, or pre-learned skills and processes.
Steven, Edmonton (May, 2011)
Prior to RDI, our daughter was very withdrawn, would get very emotional and frustrated and was unable to communicate her needs at all.  She also found it difficult to relate to my wife and I and her younger brother, in any real meaningful way. Nearly three years on her RDI journey and things look much brighter and we are hopeful that one day she will become an independent, dynamic and socially engaged member of society. Her improvements so far, have been many. She now for the very first time has begun to communicate her needs and she interacts well with her brother. She is a lot more settled socially and we can now take her out to restaurants, on outings and to family gatherings.
Zoe Thompson (May 2011)
My son’s ADOS score (which shows the severity of autism) was recorded as 19 out of 22 by two independent testers at the time of his diagnosis.  His oppositional behaviour, brought about by his rigid thinking and inability to cope with uncertainty and change, was a huge challenge to us.  Our stress levels were through the roof.
After an 18 month period of RDI, a subsequent ADOS test scored him at 12 (10 is the cut off for autism).  Although we still have a long way to go, he is much more flexible, his resilience and self-regulation are improving and our family quality of life has improved immeasurably.
I always say that without RDI, our family would have imploded.
Cost effectiveness
The cost effectiveness of RDI has not yet been subject to formal study. 
The average cost of an annual RDI home programme (for a beginner family) is about £4,500.  This is significantly lower than many other autism interventions, which can both run up costs i.r.o. £20K per annum.  As such, with its substantial lifetime benefits, RDI represents very good value for money.
End of action number 1.  See y'all next week!










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  2. Zoe....this is really terrific. Please let us know how we can help promote these initiatives.

  3. Thanks Beth, will keep everyone posted via the blog, facebook and twitter when there are any actions to take that people can help with.